Bowel Moments
Real talk about the realities of IBD...On the rocks! Hosts Robin and Alicia interview people living with Crohn's disease, ulcerative colitis, or indeterminate colitis (collectively knows as Inflammatory Bowel Diseases or IBD) and the medical providers who care for our community. Join us to meet people affected by IBD- we laugh, we cry, we learn new things, we hear inspiring stories, and we share a drink.
Bowel Moments
Global Perspectives on Pediatric IBD with Dr. Ashish S. Patel
This week we bring back our friend and friend of the show, Dr. Ashish S. Patel! Dr. Patel takes us on a global journey through the evolving landscape of pediatric inflammatory bowel disease treatment, revealing contrasts between approaches across continents and highlighting gaps in how new medications reach children.
While adult IBD patients have benefited from an explosion of treatment options over the last two decades, children remain limited primarily to anti-TNF biologics as their only FDA-approved options. This forces physicians to fight insurance battles for access to newer medications or enroll patients in clinical trials that come years too late. "We have to bring evaluation of these medications to pediatrics concurrently with adult populations," Dr. Patel explains, sharing how advocacy efforts aim to shift this paradigm.
The conversation takes a fascinating turn when comparing treatment philosophies worldwide. At the World Congress in Buenos Aires, nutritional therapy, probiotics, and dietary interventions dominated discussions—a striking contrast to North American conferences featuring pharmaceutical companies. This reveals how resource availability shapes medical approaches, with Latin American physicians developing expertise in nutritional interventions while North American practices focus on biologics.
Dr. Patel's most hopeful insights come from current research aiming to personalize treatment based on a patient's unique profile. Studies collecting genetic information, microbiome data, and environmental exposures may eventually allow doctors to determine the optimal intervention—whether medication, diet modification, or environmental change—for each child at diagnosis. "In the near future, at least for certain types of IBD, we're talking about something that's curative rather than just therapeutic," he shares, offering hope that we're moving beyond symptom management toward addressing root causes.
Join us for this eye-opening conversation that challenges conventional thinking about how we research, develop, and implement treatments for one of medicine's most complex childhood conditions.
Links:
- ImproveCareNow
- North American Society for Pediatric Gastroenterology, Hepatology, and Nutrition (NASPGHAN)
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Hi, I'm Alicia and I'm Robin and you're listening to Bowel Moments, the podcast sharing real talk about the realities of IBD Serve on the rocks. This week we talked to our friend and friend of the show, dr Ashish Patel. Dr Patel is the physician-in-chief at Phoenix Children's Hospital, where he leads four of their eight clinical centers, including Emergency and Diagnostic Medicine, the Center for Cancer and Blood Disorders and the Aerodigestive Clinic, along with some medical subspecialties, including the Inflammatory Bowel Disease Clinic. We talked to him all about the latest conferences that have been happening in pediatric IBD and everything that he's learned in all of his travels going to these conferences. We had such a great conversation. I learned so much. I know you will too. Cheers.
Speaker 2:Hi everybody, Welcome to Bound Moments.
Speaker 1:This is Robin. Hello everyone. This is Alicia, and we are always excited to be joined by our friend, Dr Ashish Patel. Dr Patel, welcome back to the show, for I think this is your fourth time.
Speaker 3:Third or fourth maybe, but I'm always happy to be here. Thank you for inviting me.
Speaker 1:Well, you are always invited back anytime, but we are very excited to talk to you today about research, because you have been to a couple of conferences, you've done some things and you have insights to share with us. However, we start, of course, with the very unprofessional question of what are you drinking?
Speaker 3:Oh, it looks so. Yeah, as you remember, I'm over on the West side of the country now, so it's only 1.30 here. So I have my Coke Zero, my second or third one today.
Speaker 1:Robin, what you drinking.
Speaker 2:I have my tall glass of water, as always, but I'm drinking coffee. I have a lot to do today and I have to get through the day.
Speaker 1:And you know I can drink coffee all the way up until I lay my head on the pillow. It doesn't bother me, so I'm so jealous of that. I am also still drinking coffee. You know that normally this is not a thing for me, but I just my day got away from me. So I'm on latte number two that I made hours ago and it's very cold right now. Dr Patel, next question for you Tell us what's going on in the research landscape. I know we wanted to start out with kind of where things at medication wise with for kiddos living with inflammatory bowel disease.
Speaker 3:Yeah. So I think this year at NASPGAN, which was down in Florida, I think you know you had the continued presence of all of this sort of expanding landscape of novel therapeutics in the pediatric space when you've been doing it this long. You know, remember when Remicade or Infliximab first came to the market, right, and you know I was a fellow in 2003 and we had this new medication come to the market and you know we're like, oh, you know what, let's save it, let's use it, what should we do with it? And you know, fast forward now, you know, 22 years, since then, it's really there's just been a really great focus on the autoimmune process, the inflammatory pathways, the cascade that can be hit from different areas, resulting in the end result of uncontrolled inflammation, and so certainly we've moved beyond. Unfortunately, still the only pediatric approved drugs are your anti-TNFs, right, and that's actually kind of sad that you know we've now fast forwarded two decades. We've been using a lot of these medications for a long time, yet the only ones with sort of pediatric approval are your infliximab, adalimumab class of anti-TNFs, and what we have seen and what we saw, you know, I think nicely at the meeting, was the continued emphasis from investigators all over the country, some involved in some of the trials but many doing investigator-initiated reporting on the continued sort of landscape of anti-inflammatory biologic I guess we'll still call it a biologic class of medications and you know that includes your, you know your alpha-4, beta-7 integrin inhibitors, your IL-12, 23 class, your IL-23 class, your JAK inhibitors, you know, moving in from the adult space, your S1Ps, and there just continues to be this growing arsenal really of medications that we could use in inflammatory bowel disease.
Speaker 3:And what we're trying to really focus on and learn on, and what I saw a lot of great presentation on, was case series or groups of patients that were using these medications in a novel way because they're in pediatrics, not in a novel way because they have adult indications. But you know, I think it's unfortunately a little bit of the addressing that, one of those bigger issues and one that again, I think I've been proud to be part of with NASPGAN, where you know going to Capitol Hill and advocating to our legislators that we have to bring testing, we have to bring evaluation of these medications to pediatrics concurrently with adult populations, right, and I understand we've always thought, oh, pediatric patient population is an at-risk population. You know, carve them out. We can't test drugs on them, but our families or patients with these chronic diseases or families of patients with these chronic diseases, are asking for it. They want to be part of that moving the needle. But then what happens in the current state is that these medications come out on the adult setting. They get an adult approval and then they sort of start trickling down, you know, maybe to our 17-year-olds and our 16-year-olds and our 15-year-olds. Or you know we have a kid that failed. You know, maybe to our 17 year olds and our 16 year olds and our 15 year olds. Or you know we have a kid that failed. You know two drugs. He doesn't have another choice surgery or going to a drug that's not FDA approved in pediatrics, Right.
Speaker 3:And so then people in usually in larger centers, or people that are known as thought leaders and I think you guys recently spoke to Dr Dubinsky, right? Did you have Dr Dubinsky on the show? She's one of my mentors and amazing. But people like that use these medications because they understand how they work. Sometimes they were involved in the trial, like Dr Dubinsky has been involved in a lot of those. But others of us, like, I'll call Dr Dubinsky and say, hey, here's something that I'm dealing with. How would you think about this? And I think we have a network of really great thought leaders around the country in pediatric GI, in the IBD space, connected by NASP again, and we'll start using these medications. So then by the time a pediatric trial rolls around which again you just heard me say we need but by the time it rolls around we're already using it in pediatrics and we're extrapolating doses and we're extrapolating usage, of course, being very sensitive about safety and those type of things.
Speaker 3:But then it's hard sometimes to get parents and families to sign their children up for a trial when they say that well, I can go and get the drug. Or or could you advocate to my insurance company which that's probably a whole other show or six, which that's probably a whole other show or six but we spend hours sometimes trying to get these medications approved for our patients. But we are able to eventually if we advocate appropriately and it's the right sort of cascade of therapies. But it just becomes very, very challenging. And I'll tell you now here at Phoenix Children's we're part of several clinical trials. We're part of several therapeutic trials. We're part of several therapeutic trials trying to help get pediatric labels for these therapies but they're hard to recruit for because you know and patients want, parents of patients want therapy.
Speaker 3:Now, pediatrics, at least in that sense, is different. We never do placebo-controlled trials, which is again often what you're doing in adults, right? You don't know if you're getting drug or placebo, so we don't do placebo-controlled trials. You're getting drug. In pediatrics it's typically looking at dosing dosing and then safety. So we're looking at those two things and I think that's where the real focus has been. So it was nice at NASA to see that continue, and it wasn't just in IBD, actually. It was nice to see it in the EOE space and thinking about a lot of the other different diseases that we take care of.
Speaker 1:Can you explain to people why a drug company wouldn't just do a clinical trial with kids and adults at the same time?
Speaker 3:Yeah, I think part of it has been there historically the worry about safety, and I think that that was just sort of something that was just always. You know, you'll read the package insert of a lot of drugs and you know at-risk populations were excluded elderly and pediatric patients. It's a really interesting concept to me, right? Because one of the things we said when we were on the Hill and speaking and trying to advocate for this early testing in kids is that you know, one of the things that is actually complicated in adults is all of their comorbid conditions, right? So now you got a 50-year-old testing this new drug on and he may have heart disease or hypercholesterolemia or hypertension or diabetes, whatever. It is right. And trust me, because, again I told you, we're part of those pediatric trials. Now I always get safety reports and it's like, oh, sign off on a safety report.
Speaker 3:The 60-year-old had emphysema after taking the medication. Well, hopefully none of my kids will have emphysema when they're taking it. But actually, you think about it, the pediatric patient population as long as you have established a baseline of safety of the medication, the pediatric patient population is probably a cleaner population to test them on. They're not being affected typically by some of these other conditions. But I think that's been the main reason, alicia, is that it was something they've sort of held on to for a long time, that oh, if we test it on a kid and something goes wrong, then it's going to look really bad because we tested it on a pediatric patient.
Speaker 1:That does make sense. I mean, nobody wants their kids to feel like guinea pigs, but especially as we're seeing younger and younger patients getting diagnosed, I mean it just it limits your ability as a physician so much to not have a true arsenal that you can use without having to fight insurance companies every step of the way. One of the things that we talked about with Dr Lee is in a previous episode is the use of combination therapy. I'm guessing that's probably happening quite a bit in the pediatric population, just because you do have more limited options. So can you talk a little bit about combo therapy for kids?
Speaker 3:Sure. So similarly, when I first started doing this, the drugs that were out there even sort of before infliximab became more readily available, was a medicine called azathioprine or 6-MP or Imuran all the same drug and then a drug called methotrexate, which some of the listeners may know as a chemotherapeutic agent, and it is used as a chemotherapeutic agent. We're using it at a much smaller dose as an immunomodulating agent. Those are common drugs that we use as oral agents. We've seen over time that they're not great as monotherapy agents and in fact have their own set of complications, particularly the class of drugs that azathioprine 6-MP-imuran is in.
Speaker 3:After infliximab kind of came to the market in the adult space, there was actually a pretty large fairly I would call landmark study called SONIC that compared azathioprine monotherapy, infliximab monotherapy and azathioprine and infliximab combo therapy, and that study clearly showed that the combo therapy was superior to controlling disease in our IBD patients, and so at that time I feel like the adults really really gravitated to that. What had happened around that same time maybe a little bit before, but kind of through that time, I don't remember exact dates but there were some patients that were found to have a type of lymphoma that was thought to be associated with the use of immunomodulating or immunosuppressing agents and they had a type of lymphoma called hepatosplenic T-cell lymphoma, which is ended up being a very, very serious type of cancer and almost uniformly fatal. And the patients that developed that lymphoma were young, were adolescent and young males almost exclusively. So the pediatric community immediately the pendulum swung away from the use of combination therapy. What was seen with the patients that developed hepatospinic T-cell lymphoma is that they were on combo therapy at some point during their treatment regimen, even if it overlapped for a very short period of time. So we as a pediatric community really went away from combo therapy. Our adult colleagues again saw the study and saw the overall rarity in their patient population right, it's not, they're actually probably not taking care of a lot of young adolescent males and so they felt more comfortable and safe using that and they have. And it doesn't seem like we've seen a huge rash of these types of cancers in the older patient population. In fact that has not been a signal. So that's why it has really been continued to be safely done.
Speaker 3:Now a couple of caveats. Some people and in pediatrics, when we go to use combo therapy, typically what we'll do is not use azathioprine, which is the one that was seen present when they used combo therapy in those patients that were reported with T-cell lymphoma. So we'll use something like methotrexate if we want to use a combo therapy or if we do use a combo therapy. So I think it's something that continues to be utilized. I probably still have a handful of patients on combo therapy, but they would all be on methotrexate and a biologic.
Speaker 3:It has now become interesting, as the arsenal of therapy has increased, that what about combo therapy? Is that a word? Biologic agents, right? So what about if I take?
Speaker 3:Hey, I have VitoLizumab which it works really well, thought to work a little slower though in more recent studies. You know, seen in real life, that it works faster than we thought in the original studies but, say, a drug that you think takes a little longer for onset, right? So when VitoLizumab first came out, we thought it took four to six months to work. And then what about stacking that with, say, an Infliximab that has a very rapid onset of action and so use it for its rapidity of response and then pull it off and let your VitoLizumab be your long-term therapy, right?
Speaker 3:Or in some patients where you know you use an oral agent like tofacitinib, and where you have a gut-specific drug partnered with a systemic drug like Infliximab Again, vitolizumab is also a gut-specific drug and partner it, stack it with or combo it with a systemic drug, and that's definitely has been done. We have done it very, very rarely. I haven't actually happened, but we've seen some very sick kids here in our practice, where we have a couple that have tried what we call combo biologic therapy, and I know, again, large centers have done that or have heard of that. Not a lot of data out on it, so that's another one that we need to see reported more and more in the literature.
Speaker 1:I guess, as these newer therapies are coming out and as we're learning more, it does seem that the IL-12s or the IL-23s are performing really well, especially for certain populations. Are you able to use that as it relates to some of your patients, especially some of these super sick ones, like, for instance, you have somebody with fistulizing Crohn's disease? I think I've heard one of the aisles is a particularly effective medicine for, like, that type of Crohn's disease. Are you able to use that to your advantage somewhat?
Speaker 3:Yeah, yeah, I think so. I mean I think so. The two medicines you know Stelara, which was the original drug, the original IL class IL-1223, and then Skyrizzy, which is now just a monoclonal IL-23 inhibitor whose data you know Stolaris data was good and obviously got its FDA approval for the treatment of adult inflammatory bowel disease, and Skyrizzy data looks even better. I think we have. We have, but still not as first-line therapy in pediatrics. We typically still have to go through. We used to talk about how we want to get away with step therapy or pyramid and all this stuff where we were using steroids first and then Imuran second and then a biologic. So now we're kind of in a different place of step therapy where we're like oh, if we think that Skyrizzy is better than Remicade, then why are we using Sky Rizzi first when? In pediatrics? I think still because it has a pediatric indication for the most part, and not only because we have, you know, because maybe of the pediatric indication. I don't want to, I don't want to overstate that, because we do still think that the anti-TNF biologics have great rapidity of response, have great efficacy and overall safety when used as a monotherapy, and so I think most of us. And then when you start talking about complicated disease, like you mentioned, fistulizing disease or stricturing disease, I think again, also, we have the most data around the anti-TNFs, but yes, we need to learn more about how these other advanced biologics work, particularly in that complicated disease course. And that's hard because, think about it again, when we think about the type of diseases that present to us in pediatrics, I think still probably about 70 to 80% of patients that we see would say Crohn's disease are the inflammatory, non-structuring, non-penetrating, and so again, and our patient population is a lot smaller than the adult population, the vast majority of patients we see are those patients. Then maybe you have 10 or 15% that are structuring, 10 or 15% that are fistulizing or penetrating disease, right? So just the number of patients that we still we have a chance to gain experience on using these advanced therapies, I think is still pretty limited and I think still in the literature and you know, at these meetings again it's nice to see but they're presented in case series or case reports.
Speaker 3:We, for example, presented a study that we had been working on where we have some children that had what was considered an extra intestinal manifestation, where they had a genital involvement of their inflammatory bowel disease, right.
Speaker 3:So now we're talking about this disease that typically affects the gut, but these patients had involvement of their genital organs, which it was, as you can imagine, it's just scary number one but really debilitating for these patients. And now looking at what therapy they respond to, and again we sort of saw that they needed more aggressive therapy. Even if it was the TNFs, it was at the higher dose or the more frequency to get penetration of the drug into some of their skin and those organs to get a response. But that was a case series of like three patients, right, and it's actually interesting, after we presented it we've had people from around the country say, oh, I've had one of those, one of those, and so now we're trying to go back and say, hey, can we actually collect a bigger group to publish an article on regarding that? But I think that's going to be the continued push in these patient populations, particularly with the complex forms of disease.
Speaker 1:Oh, those poor babies. Oh my gosh, that sounds very unpleasant. That's the wrong word to even use for that. Really, that sounds debilitating. This is going to be an off the wall question, so you don't have to answer it, and then I'm going to circle back to clinical trial. So here's your warning. I am so curious about when you scope somebody. Can you tell a difference between a Crohn's disease or an ulcerative colitis? Like how, what is? What is the difference in how they look?
Speaker 3:Yeah, yeah. So sometimes you can. There are some gross findings, you're right. In the end we really like to hang our hat on microscopic histopathological results, right. So looking for chronic active inflammation in all of the regions, right. But there are some gross, I think everyone would understand. But visual differences.
Speaker 3:And so ulcerative colitis tends to be what we call a continuous disease. That should start in your rectum, so right. When you put the scope in inflammation that then extends proximally, right. So the three types of ulcerative colitis are really oh, I have proctitis, or I have left-sided disease, or I have pancolitis, right. So typically inflammation in a continuous pattern that starts in the rectum and extends proximally. With ulcerative colitis you tend to have more bleeding. The tissue is very sensitive, the scope touches it and it bleeds those types of things. And sometimes you can see pseudopolyps in ulcerative colitis because the inflammation has been going off for so long. Not real cancerous polyps, but then there's sometimes a lot of them, but they're an inflammatory response.
Speaker 3:In Crohn's disease, what's been described visually is that it can be skipped areas, right. So you put the scope in rectum, looks clean. Sometimes you have this concept of rectal sparing doesn't affect the rectum but then you get up and there's an area that looks inflamed, go a little farther. Oh, it looks good again. Then you go a little further. So that's typically classically been referred to as skip lesions, areas here and there, and then really probably the one big sort of gross or visual finding is location or real estate right. So with ulcerative colitis the inflammation should be limited to the colon. If you then get into the small intestine, the ileum, and you see inflammation there, ulceration, exudate, inflammatory polyps, then your mind's right is turned on to it being Crohn's.
Speaker 3:That's why also because it's so important in terms of how we think about therapy in pediatrics typically these patients when they're getting IBD evaluations, they will get an upper endoscopy and a colonoscopy simultaneously. You know, one of the things we did again 10 or 15 years ago we started Improved Care Now was thinking about a diagnostic bundle like how do we appropriately evaluate these kids at their diagnosis? And that diagnostic bundle now says that patients being evaluated for IBD should get an upper endoscopy, a colonoscopy and some formal small bowel imaging. So even where I can't get to with a scope, they should have a upper GI small bowel follow-through. We use MREs a lot because it's no radiation MRI magnet. Some people do what's called small bowel capsule, but that's the diagnostic bundle to make sure they don't have disease hiding in other places. So there is a way to tell that, but you want to always match that to then what the biopsy findings are.
Speaker 1:Got it. Thank you for that. Okay, circling back to clinical trials, so one of the things you said is that there is limited engagement in clinical trials because a lot of people can still get access to the drugs as long as you fight with their insurance companies enough, I guess. My question then is what's the impetus for somebody to participate in a clinical trial? Is it like because you typically get free drug when you're on a clinical trial? Is that part of it? And then also, how do you layer in the sort of health equity component of that Like is it that there's, like it then becomes, this whole population of people that just don't are underinsured or uninsured or, frankly, poor? Like what is it that? How does that sort of layer in to what we're looking at for clinical trials?
Speaker 3:Yeah, a hundred percent. You know, we certainly worry about that in the pediatric space, right, because one of the things is that we're trying to provide through a trial, often in the adult population, you're providing access to a therapy that's not otherwise available, right, so that's very clear. And you participate in research. Again, I've done research where they're like you know, why are you giving them a $10 card? You know it can't be coercive, and I was like a $10 gift card is coercive. But so, also, right, we don't pay money to do this because, again, we can't, we don't want to jade that population by making it some sort of a financial windfall for the parent or for the patient adult or pediatric, right, pediatric, obviously, they're not getting the money the parents own. So we have sort of tried to try to be careful in terms of how we phrase that when we approach families in terms of access.
Speaker 3:I think still, on the whole, most of the families that do sign up for it, they like the idea, as do we, that there's actually a little bit more oversight almost when you're in a clinical trial, both in terms of sort of laboratory workup, those type of things, a frequency of appointments. Sometimes there's saying, okay, we'll have another endoscopy that's paid for by the study at a year. So I think in some sense some of the families look at it as an opportunity to have a little bit of extra oversight when they're using a new medication that's appreciated. The flip side of that is wait. I got to come for 12 appointments in the next 12 weeks because a new medication that's appreciated. The flip side of that is wait.
Speaker 3:I got to come for 12 appointments in the next 12 weeks because you know that sometimes you know that's I'm over-exaggerating, you know, but it is definitely more appointments than you would come, and so it is sometimes a balance of that and I think that's where sometimes families look at it, sometimes families I know I hear them talk out loud and they do. I think financial peace is a consideration of what can they feel like they can safely afford for their child. But we do try to make it very clear that if you don't do the trial, we're going to proceed in the same way. We did right and whether you're in the trial or not, your care is the same. And if this medication doesn't work, whether you're on the trial or not, your care is the same. And if this medication doesn't work, whether you're on the trial or not, I'm going to hold it to the same fire. You will come off the trial if it's not working. We'll come off the drug if it's not working and we're not in a trial.
Speaker 1:Okay, thank you for that. Moving on, the other activity that you did not too long ago was to go participate in the world Congress of pediatric IBD in beautiful Buenos Aires. So please do tell us about that trip and all the things you learned there.
Speaker 3:That it was absolutely amazing. So just maybe a little bit of context for some of the listeners. Every year, of course, we have NASP again, our annual pediatric GI meeting. We learned a bunch of stuff, actually, we learned actually going on the hill at the pediatric GI, which I would encourage everyone to go into. It's a great profession, but it's one of the pediatric subspecialties that actually holds their own conference, like pulmonology doesn't have their own pulmonology conference every year, they just go to the American Academy of Pediatrics conference or the larger pediatric conference, but Peds GI has their own conference, which is NASP.
Speaker 3:Again, for those that live here in North America, there's equivalent, I think, four societies around the world the European Society, the LASP, again the South American Society and then the Asian Society, and I'm blanking on the acronym for them right now. So every year, nasp can host our annual meeting and then every four years, these four societies come together to hold what's called the World Congress of Pediatric Gastroenterology, and four years ago everyone remember what that was COVID. It was supposed to be in 2020, and it was supposed to be hosted by the European Society in Copenhagen. It was on my calendar to go and it got mostly moved to virtual and so it was. Unfortunately, it didn't happen this year actually not this year, it's 2025,. 2024 was the four-year mark and it was hosted by the Latin American Society in beautiful Buenos Aires, argentina. So I had the opportunity to go down. It actually was really fun.
Speaker 3:It was the week after Thanksgiving my kids are big enough now and so we took them the week before over Thanksgiving and we went down to Buenos Aires and we went down to Calafate, which is near the Prieto Moreno Glacier, fourth largest ice field in the world and, as you know, sadly, like all of our ice fields, shrinking but just absolutely beautiful One of the few ice field or glacier that you can walk onto. So you take a trek and then you just essentially walk onto the glacier. We had to put our crampons on and got to sort of walk around the glacier. It was a lot of fun. And, speaking of a good drink, at the end of hiking around the glacier, the guy goes and chips glacial ice and pours you a whiskey on glacial ice, which was really cool. It was really bad whiskey, but the ice was the best and you know it's. It comes off this glacier, right, so it's so dense. The guy says that that ice will stay not fully melted for like 72 hours, because it's so dense, right? The ice that's made in your refrigerator has a bunch of air in it, so it melts away. Because it's so dense, right? The ice that's made in your refrigerator has a bunch of air in it, so it melts away. That was really, really cool.
Speaker 3:We then went further down to Cheltenham, which is near, is not near, is at the base of Patagonia. So we were at the base of those, the famous mountains that everyone knows by visibility because everyone's seen someone wear a Patagonia fleece or sweatshirt. But those mountains were right in front of us in real life and it was incredible. So we did a hiking expedition one day and we did a horse riding one day and we did a. My kids have gotten into climbing and so we actually did a climbing thing with a climber he, he but he went up and put a big hook in and then he let the kids climb up and belay down. It was fun, just beautiful, beautiful country. Their natural resources are really, really protected. They don't drill or really do any exposure of the natural resources controlled by the government. There's probably some good and bad around that, but it's a beautiful, beautiful country and then the family came home and then I stayed for the World Congress, which was back in Buenos Aires, and it was really really great experience.
Speaker 3:The last time I was in South America for a World Congress was for the one hosted in Iguazu Falls in Brazil. That was in 2008. And I remember from then too, but this time again it really reminded me about some of the differences in approaches to disease states. I'll tell you in the convention hall there, you know again a lot of all the booths set up, but they were all nutrition companies all formula, supplemental nutrition, advanced nutrition companies.
Speaker 3:There was no biologics, there was no drug companies. Actually, funny enough, the only other two stands. Well, there were some probiotic stands, and then the other two stands were a eat more meat carne Argentina stand and a wine wholesaler that they had set up, I think, for people that were attending from around the world that they could ship wine home.
Speaker 3:But, it was really great and even the programs themselves. Like you, would go to session. There would be an IBD session and there would be whole sessions focused on nutritional therapy and changing the microbiome and using probiotics and thinking about really, as you can imagine, right like these countries, what they have access to. Right, they don't have access necessarily to biologic du jour, the newest biologic, or even, quite frankly, probably infliximab or adalimumab very easily right Now. Maybe this biosimilar space will change some of that, because some of these biosimilars have come from some of these other countries. But it was really really great.
Speaker 3:I attended a session that you know talked about. You know pros and cons of a carnivorous diet and pros and cons of a vegetarian diet or vegetarian versus vegan differences, and people are meaningfully looking at not only is it like, oh, you know it's healthier, but how is it changing your microbiome, how is it changing disease, history and course and process and all of those things. So it was great. It was a fun meeting to attend and it's always nice. We love traveling and so it's always great to be in, see the different culture, both culture you know restaurants and nightlife and the history in this place. You know Buenos Aires was originally largely settled by well, obviously, native Argentinians, and then a lot of Spanish influence and then a lot of the city burnt down at one period of time and then the Italians came back and built it. The architecture is just beautiful. It is a really, really pretty city. People always talk about it being a very European city in South America and you could definitely see that in the architecture and it was a lot of fun.
Speaker 3:It's a long flight, but not horrible. You know, you always think in your mind that South America is just straight down, but you know it's, the time difference was only four hours, but it's a one hour ahead of East Coast. So it's, you know, over. So we flew from here to Houston a couple hours, not bad, and then 10 hours from Houston to Buenos Aires. A little bit of a long flight, but not a big time change, but it was great. Looking forward to the next, they announced World Congress 2028. Maybe we should do the podcast from location.
Speaker 2:I agree, yes.
Speaker 3:Let's get some support for that, so it's going to be hosted.
Speaker 1:Lake Farms. We're talking to you.
Speaker 3:Hosted by that Asian Pacific Island group and I'm sorry I'm blanking on the name. I should know it if we're asking for money, but it's being held on the Gold Coast in Australia, so not in Sydney. But what's the town just up from Sydney? Oh, I'm blanking on it. It's not Melbourne, no, brisbane. Brisbane, that's it. Yeah, yeah, so it's going to be in Australia is World Congress 2028. That's awesome.
Speaker 1:I mean 100%. I think we should do it because now you know, we just interviewed Tish, who is in Melbourne, and so I think you know, and we just finished talking to the, you know, the CEO of Crohn's and Colitis Foundation of New Zealand, so we have to go visit, right?
Speaker 3:That's right.
Speaker 2:That's right. Okay, I have a question about these sessions at the World Congress. Do they do more diet-related research in other countries because of access, and if they do, why aren't we referencing that here?
Speaker 3:Yeah, I think it has been done. It just hasn't been published or talked about or discussed, but now it is. So now we are getting some of their experience and data, even like we did with the European studies around exclusive enteral nutrition, partial enteral nutrition. You know, we drew a lot of that work from those places, but I think just historically, you know, we haven't not a lot has come out from some of those sites and they may have been sort of using it and that's just their standard of care. You know, when we first were trying to figure out exclusive enteral nutrition, we're like how is anyone doing this in Europe? Europe says they're doing this with all the patients. Well, that's the therapy. They don't have another choice. It's not like you're like oh, here you know, go on formula for 12 weeks or let me give you Remicade. Your choice is to do that. Now, you know, again, Europe has changed as well, but I think in some of these places, yeah, that, due to access, this is what they do.
Speaker 1:So of the diets they were discussing, was there any that seemed more effective? Or did it depend on the country? Because I mean, I know from what we've heard it sounds like places that start to adopt a more westernized diet do tend to see an increase in inflammatory bowel disease. So was there a difference in sort of the type of diet and then also where the diet was being done Like? Is it like the pescatarian diet in Japan worked really, really well? But it might be because it's Japan.
Speaker 3:Yeah, yeah, no, I think I think there is an environmental role, most certainly Right, and you know, we've seen it. You know I I try to keep a little bit of a pulse on India. You know where I'm from, where my family's from, and you're exactly right, you know, you saw that not only was it, one of the things that is happening is the movement from a rural society to an urban society. That shift right is a geographical or physical shift. It's also a shift in where your food comes from. As you get more and more urbanized also, you have to make so much food for a population in a limited amount of place. But the environmental factors change too. You're not living on the farm anymore, you're not being exposed to some of the normal bugs and dirt things that you wore, and so a lot of people say that some of the changes we're seeing in some of these developing countries is where the US was 50 years ago or 60 years ago and where we've seen again, if we look back historically, this continued rise of autoimmune conditions, including inflammatory bowel disease. I think this, what you're saying, is what makes diet research so hard, is that there's so many variables in it, right?
Speaker 3:When I first started at UT Southwestern. I had this idea and it just became so like log jammed with variables. But I was like you know. I would love to see like if you could take migratory populations, immigrants landing in this country that don't have a strong history of inflammatory bowel disease in the country they come from, and then actually following them now again, also has to be. It can't be a one month study, right?
Speaker 3:You're probably talking about changes that occur over five, 10, 15, 20 years, as that immigrant acclimates to a society, to living here or living wherever they move, and maybe initially still eats all of their own, all their own traditional food, though it's now the source is different, right, but they may be still eating the food. Now they started eating McDonald's or they started eating Chipotle or whatever. They start now integrating in fast food or processed foods and but they foods, but their diet is still mixed. Now they may be an immigrant that comes from a vegetarian country, like India for the most part, and then moves to a place where now introduced.
Speaker 3:So again, the point is, the variables are so the amount is so many, because we know, even when we look at microbiome studies in our own country, in the United States, we did that in one of our pediatric consortiums one time, and you could see that patients with IBD in the Northeast had a different microbiome profile than patients in the Southwest or on the West Coast and Midwest. And so we're like, oh well, we had hoped to do this to figure out what microbiome was bad, what was causing IBD, and then what we just found out is, oh crap, literally it's being caused by a bunch of different microbiomes in different varieties that impact people differently. That has been. I think the real struggle with doing good dietary nutritional therapy research is that there are just so many variables that play a role.
Speaker 1:Is there anything common? Is it like this kerogen or whatever they are? Is this preservative, something that is universally known like red dye, number four, or whatever it is? Has there been anything that we've been like? Okay, this is the common thread that nobody should have Not really Not that we've seen.
Speaker 3:We've even looked back at, like you know, going back to, you know, even, sort of pre-diet, like what was your route of birth? Right, vaginal versus c-section, because that's the first inoculation of bacteria in your body. How were you fed, you know? Is there a difference, breastfed babies versus formula fed babies? Again, because we know, at least we think, that a large amount of your microbiome is established in the first few years of life and you're not changing it a whole lot, though you might. If you move, your diet changes significantly.
Speaker 3:But, there hasn't been a yeah not really what you know, like what we I think are looking for is a smoking gun, right, like hey, this causing a problem in a vast majority of people? There was a time when something called mycobacterium avium paratuberculosis was talked a lot about. It causes a similar type, phenotype of disease in cows and we're thinking, well, are we passing that from milk to humans? And it's causing disease, a similar disease now called Crohn's disease in humans. But you know, they again similarly, just as they got bigger populations and looked at it, they just weren't able to identify it in a vast amount of those patients. So I think that's probably our continuous biggest struggle as research. Right, therapeutics is really great because it's improving the quality of life of our patients. It's changing the natural history of disease, decreasing the amount of hospitalization, surgeries and risk of cancer in those patients. But it's not, you know, we always talk about like how to.
Speaker 3:In my lifetime I still hope that the research that's being looked at in terms of etiologies starts being able to pull out buckets or buckets of patients with a particular type of etiology that then could be cured. Because when this MAP conversation was going on, one of the theories was like, well, just put them on tuberculosis therapy, because a tuberculosis-like drug put them on tuberculosis therapy for nine months. See if it cures their Crohn's disease. Well, first that's a pain, it's a lot of medication and it didn't actually cure their Crohn's disease. But like that right. So can we actually figure out? Are there particular types of Crohn's disease that might be amenable to curative therapy rather than just therapeutic therapy?
Speaker 1:Isn't that what you were doing with the risk stratification study?
Speaker 3:Yep, yep. Similar right Is that we were looking at trying to figure out if there were features of their disease that we could see at time point zero, that could predict where they're going to be and use that data to determine how aggressive we need to be in their therapy, right? Similarly, now CAMEO, that's another sort of study where we're taking all new diagnoses with Crohn's disease. We're actually trying to capture patients at diagnosis. We're actually recruiting patients at high risk of suspicion Crohn's disease before their scope and then capturing material at their scope and then if they have Crohn's disease, then they go into the study and they're followed forward. And then how biologics change the natural history of disease. So that's actually a large NIH funded study that's going on right now. That's multi-center around the country that hopefully will try to shed some light on how do we, can we understand how patients not only appear at the beginning, but how do things change and when do you enter with a biologic? Does that affect how it changes things and those types of things?
Speaker 2:What do those kinds of studies, if anything, tell you about the adult population, since you're following pediatric patients from the point of diagnosis?
Speaker 3:Yeah, it's been something that's hard right, Because you can imagine like they turn 18, 19, 20, and then they go to an adult doctor and then we don't hear about them again usually right.
Speaker 3:But I'll get sometimes a wedding announcement or a graduation announcement, but not how they're doing 20 years from now. And so some of the registries there's a few registries now that are aimed at more trying to capture data and it was something like when the FDA approved some of these medications. They told the companies you have to make a 20-year registry. We don't want to just know what the risks are in a year. You need to follow any patient, as many patients as you can over a 20-year period. Right, and we're actually still part of both of those, two of those registries where we enroll patients. But I think it is hard for us still to have that complete visibility of what happens on the adult side when they get into that adult practice. And you know, usually we don't hear if there's a complication or a problem, unless they want to know something very specific about their therapy when they were a pediatric patient.
Speaker 2:Right. I think it would be fascinating to be able to know that.
Speaker 3:Yeah.
Speaker 1:Well, and I'm curious about the genetic component of this. Is that something you're also looking at Like? Are you doing genetic testing for all these kids as well and trying to see what is maybe a common thread as well?
Speaker 3:Yeah. So in some of these studies, like I mean, I think in some of our these new longitudinal studies, we are collecting blood work, looking at some of those things. It's not stuff that we have the knowledge to share back with families real time, but the hope is that when we put the data together as a whole, then we can look back and say two things right, are there genetic features that tell you how the disease is going to behave? Is there genetic features that tell you how you're going to respond to medication? Right, because that's the other thing. Right, it's like we, you know, using this step therapy, I'd love to be able to draw blood work on a new diagnosis and tell you what the best medicine for you is today. Or diet right, what's the best diet for you today? Like it doesn't have to be just medicine, right? We don't want to say just on medicine, like what, what are the things that could change your natural history of disease?
Speaker 1:Or even if there's an environmental component you could change too. You know, like, are you living in a in the mountains where there's not enough oxygen, or are you living in Houston where there's a bunch of toxic mold? You know, whatever it is like sorry, houston, but you know what I mean. Like is, is there other other components to this as well? Cool, exciting times, exciting times, and I a hundred percent love your idea of us going to Australia and doing, you know, some live podcasting there. And it is the Asian pan Pacific society for pediatric gastroenterology, hepatology and nutrition. So apps, apps, gun.
Speaker 3:Maybe. How do?
Speaker 2:I get an app scan.
Speaker 3:A lot of a lot of a lot of consonants without many vowels.
Speaker 1:No, there's just two A's. That's it. It starts with an A and almost ends with an A. So yeah, a P P S P G H A N. How would you say that?
Speaker 2:AppScan that's how I would say it AppScan.
Speaker 3:All right, that's what we'll go with.
Speaker 1:Nobody put me in charge of naming things. It's probably wise. Actually, that's not true. I named this podcast, didn't I? You did.
Speaker 3:Maybe they should put me in charge. Okay, last question for you, dr Patel. Tell me something that you found super hopeful about the recent learning experiences that we're living in. The current research effort, interest, energy that's being put into inflammatory bowel disease obviously is greater than any time in history. We just know more. We're still learning a lot.
Speaker 3:It's sometimes humbling because you know, you go to medical school you think, oh well, I know everything I need to know. I went to medical school and we're constantly learning about the human body and how it changes and how it responds and pathways, and so that's actually really cool to me. That's something I tell medical students and residents and fellows that we interact with. Still, is that always challenge the norm learn more. If it doesn't fit, then it doesn't fit, rethink it.
Speaker 3:But for parents, I think my encouragement is that we are living in a time where there continues to be a really a strong emphasis on understanding pathophysiology, disease history, natural history, risk and then therapies. And I think what I continue to leave these meetings that I go to is with this renewed hope that there is really a near future where you know at least types of this disease are going to be, where we're talking about something that's curative rather than just therapeutic right. It cures your disease, not just a band-aid, and I think that's encouraging for allid and I think that's encouraging for all of us. I think that's encouraging for our patients to hear. Now, I'm getting old, so sometimes when I tell my patients I say well, in your lifetime, I think or I hope that this is happening.
Speaker 3:I think maybe when I was first starting I may have included myself in that conversation, but I really do think that what you hear and just the incredible work that's been being done. We had a really neat keynote presentation recently, john Bernard, that just talked about just how, even as you think about single therapies, like how they get from ideas to patients, and how that's continuing to be done at a quicker and quicker rate. That part is encouraging. I hate to see any kid have inflammatory bowel disease. I'd rather be out of business on that front, but I think we're seeing more and more opportunity for these kids to be well.
Speaker 1:Totally agree. And yes, unfortunately, I think we are getting old enough to be saying in somebody else's lifetime maybe not ours, but who knows Fingers crossed that that's not the case. Well, dr Patel, always a pleasure to have you on the show, always a pleasure to catch up with you. So thank you so much for joining us and sharing your wisdom and knowledge with us, and thank you everybody else for listening. So cheers, guys.
Speaker 3:Cheers everybody.
Speaker 1:If you liked this episode, please rate, review, subscribe and, even better, share it with your friends. Cheers.
